A unified voice for aphasia

1. A unified voice for aphasia Linda Worrall Ellayne Ganzfried Nina Simmons-Mackie Jackie Hinckley Sarah J. Wallace

2. A unified voice for aphasia – to promote unity across national and international stakeholder groups (researchers, clinicians, consumers) • A unified voice for aphasia – to unite people living with aphasia, researchers, and clinicians to create one “voice”. Rationale for A unified voice for aphasia

3. International health and disability agendas increasingly shape services. • Links with peak global health and disability organizations are important for advocacy and awareness of aphasia. • The World Health Organization has approved the World Stroke Organization as one of their non-governmental organizations in official relations. • Aphasia United is a member of the WSO. Rationale for A unified voice for aphasia

4. A new peak international organization that aims to bring together the global aphasia community and represent its voice to the World Stroke Organization.

5. NAA, Aphasia Hope Foundation, International Aphasia Movement ANCDS, ASHA, CASLPA, etc AIA, Verein der Aphasiker Sitz Bad Segeberg e.V.etc Aphasia Alliance BAS Speakability AAA, Talkback, Aphasia NSW, Googledaphasia organizations AphasiaNZ

6. Consumer • AIA • Aphasia Alliance • NAA • Research • IALP • The Academy of Aphasia • IARC/CAC/BAS • Professional • ANCDS, ASHA, SPA, RCSLT, IALP Unitingexisting national and international organizations and individuals

7. Progressto date

8. 2011 2012

9. October 2012 January 2013

10. Key features: • The Movement is a coalition whose individual and organizational members invest their own resources to carry out activities that will advance the goals of the Movement. They can also raise additional resources for this purpose. • The Movement does not have a chairperson, bank account or budget. • The Movement is managed by a secretariat and an advisory group. May 2013

11. Summitoutcomes

12. An opportunity to identify a common purpose and develop strategic goals • Consumer, research and professional representation from Australia, Austria, Canada, Hong Kong, New Zealand and USA • Task forces created to expand interest in involvement in Aphasia United and establish discussion groups The Summit

13. People with disability must play a central role in decisions that affect them (WRD, 2011). People with aphasia must be comprehensively and authentically involved in the process of advocacy. Role for Aphasia United: Build capacity in aphasia consumer organizations to support the involvement of people with aphasia at an international level. Goal 1 : Build capacity among consumer organizations

14. No formal evidence-based clinical guidelines exist for aphasia rehabilitation. No consensus on what constitutes a rehabilitation pathway for people with aphasia. Role for Aphasia United: Guide a best practice consensus process. Goal 2: Build consensus about best practices for aphasia

15. Aphasia United Summit endorsed by the World Stroke Organization (www.world-stroke.org). Role for Aphasia United: Work closely with the WSO in its awareness campaigns and advocacy roles. Goal 3: Raise awareness

16. There is a need to: • Combine existing knowledge • Develop processes for transferring knowledge across cultural and national boundaries • Identify research need areas that can be productively addressed by the international community. Role for Aphasia United: Combine the perspectives of researchers, clinicians, and consumers in determining international research priorities. Goal 4: Set an international research agenda

17. A recent study determined the research priorities of a group of Americans with aphasia (Hinckley et al., in press). • This study will be replicated elsewhere with other stakeholders. • An e-Delphi study will determine a ranked order of research priorities in aphasia. Goal 4: Set an international research agenda

18. Taskforcedevelopments

19. www.aphasiaunited.org developments • Research in progress • List current research projects • Project alerts • Issue “call” for participants • Evidence links • links to guidelines and databases relevant to EBP Research Taskforce

20. Secretariat • The voluntary secretariat is responsible for Aphasia United’s administration. • The current secretariat is Linda Worrall, Nina Simmons-Mackie, Jackie Hinckley, EllayneGanzfried and Sarah Wallace. • The www.aphasiaunited.org website has been funded by the CCRE in Aphasia Rehabilitation and the current hub is at The University of Queensland. Governance taskforce

21. The roles of the secretariat are to: • Support and advocate for Aphasia United • Maintain the website • Co-ordinate or lead key strategic working groups of the Advisory Group • Propose new members of the advisory group, with a focus on maintaining and increasing diversity • Provide, from time to time, summaries and analyses of Aphasia United’s activities, including plans for future actions. • Plan and conduct Aphasia United summits Governance taskforce

22. Advisory group • A voluntary Advisory Group is being assembled to guide Aphasia United’s activities and strategic direction. • Working groups will be formed from this group to enable achievement of goals. • The Advisory Group will also represent the views of their stakeholder group in shaping strategic directions. • Membership on the Advisory Group will change over time (3 year terms). Governance taskforce

23. Affiliates • Affiliates of Aphasia United may be either organisations or individuals. • There are no fees, rather affiliates are invited to invest their own resources to carry out activities that will advance the goals of the Aphasia United. • Register as an affiliate at www.aphasiaunited.org Governance taskforce

24. Association Internationale Aphasia ANCDS, ASHA, NAA AAA, CCRE Aphasia Rehabilitation, Australian Society for Aphasia CurrentAphasia United Affiliates AphasiaNZ

25. Dr Aura Kagan, Canada • Dr Miranda Rose, Australia • Ms Ruth Patterson, Canada • Dr Anthony Kong, USA/China • Dr Tami Howe, New Zealand • Dr Ilias Papathanasiou, Greece • Ms Janet Brown, USA • Professor Brooke Hallowel, USA • Dr Subhash C. Bhatnagar, India • Dr Simon Horton , UK • Professor Stacie Raymer, USA • Professor Marian Brady, UK • Dr Mieke van der Sandt-Koenderman, The Netherlands • A/Prof Deborah Hersh, Australia • Dr Julie Morris, UK • Professor Laura Murray, USA • Mr Keith Lincoln, Sweden • Ms Sarah and Joanie Scott, UK • Professor Anu Klippi, Finland • Dr Donald  Weinstein, USA   • Dr Jaqueline Stark, Austria • Dr Fabiane M. Hirsch, USA • Dr Glenn Goldblum, South Africa • Dr Clare McCann, New Zealand • Dr Margaret Rogers, USA • Professor Silvia Rubio - Bruno, Argentina • Dr Katerina Hilari, UK Advisory Committee

26. Aphasia United Summit endorsed by the World Stroke Organization (www.world-stroke.org). Role for Aphasia United: Work closely with the WSO in its awareness campaigns and advocacy roles.  Aphasia United paper on the relationship between stroke and aphasia - in a major stroke journal - International Journal of Stroke? For discussion today

27. Background • Practice – PWA have some of the worst long term outcomes – why? • Research – Are PWA included in stroke research? Is sufficient research going into aphasia research compared to stroke research? • Policy - Stroke can lead to many types of impairment, but only aphasia has its own local, national and international associations i.e. aphasia organizations and centres have developed independently of stroke organizations – why? Aim • To determine whether people with aphasia are equally included in stroke practice, research, and policy. Stroke and aphasia paperTitle: Stroke and aphasia: unilateral neglect? /The marginalization of aphasia within stroke research, practice and policy/ Stroke and aphasia: the parting of the ways.

28. Methods • Literature reviews? What type? Practice • Do PWA have poorer outcomes? • Do PWA get the same quality care as stroke patients without aphasia - More likely to have an adverse event? Cost more (longer length of stay ). Across the continuum of care, do they get quality of care? - FAST, TpA, acute care, discharge destination, secondary prevention? • Speech pathology time and resources - Aphasia swallowed up with dysphagia in acute settings? • Lack of guidelines for clinical practice? • Information available in other languages or interpreter required. No policy for aphasia. • Others? Stroke and aphasia paper

29. Methods - Research • $ spent in aphasia research ~ 30% of $ spent in stroke research? • # publications in aphasia versus stroke (particularly in mainstream stroke journals) • Are guidelines for aphasia rehab as strong as guidelines for hemiplegia, etc? • Inclusion of PWA in stroke research? (Ali & Brady articles) • Many stroke outcome measures are not designed for people with aphasia, either because they do not include content relevant to communication or PWA, or because it is not accessible. • Others? Stroke and aphasia paper

30. Methods – Policy & Support • Aphasia associations emphasize accessibility, self determination, awareness and support. Stroke associations emphasize prevention, rehabilitation. Thematic analysis of websites? • Accessibility of stroke organization websites? • Inclusion of PWA in stroke groups • # of aphasia specific associations etc – ask them why not join stroke associations? • $ to stroke versus aphasia support organizations – 30% • Others? Stroke and aphasia paper

31. Potential recommendations • All stroke clinicians and researchers have mandatory aphasia training (by PWA). • All stroke publications require justification for non-inclusion of PWA in studies. • Stroke associations need to advocate for or adopt aphasia associations. • Consider affirmative action for PWA e.g. priority for stroke unit admission. Stroke and aphasia paper

32. Process and timelines • Authorship • Others? Stroke and aphasia paper